How do non-verbal patients get their needs and wants across to staff in hospital?
After a recent hospital stay I have concerns about the level of accessibility that non-verbal patients (whether this be from a disability or from illness) have to a form of AAC (Augmentative and Alternative Communication) to enable them to communicate their needs and wants whilst in hospital. I would think communication in this situation is vital, the ability to tell staff if they are feeling unwell, in pain or if they need assistance. I am hoping that stroke wards give their patients access to communication boards or some form of AAC however at least in our local area I worry this is not the case. I had a friend ask me late last year if I could help her as she had a family member in hospital who had a fall and hit their head. They were no longer able to communicate and were becoming very frustrated and angry. I went online and found a variety of good hospital/health communication boards and resources, which I printed out for her. They were grateful.
In our situation we advised the hospital at our pre-op meeting of our daughter’s complex communication needs and how she communicates. It was all written down in her file. I guess we were hoping they would have some sort of communication board available to their staff to use with her. I am not sure who actually reads this information, as I know no one that we dealt with during our 8 days in hospital was aware of her issues. All the nurses would ask Caitlin questions and when they couldn’t understand what she was trying to say/sign they would just look to us to interpret. This was fine for our situation but what if the patient didn’t have someone there to interpret their communications for them. What happens then? It really worries and upsets me to think that these patients could be going through pain or feeling unwell because as a society we haven’t got basic procedures in place.
Prior to our hospital stay, I had prepared a number of resources that we took with us to assist our daughter as I wanted and needed her to have the ability to communicate with us. I started with a social story on her iPad explaining the operation she was going to have. I also had a variety of communication options at hospital including visuals, a health style communication board and a hospital communication page on her device. I am passionate about AAC and a huge advocate for making communication accessible to everyone. Unfortunately, I fear none of these resources are made available to other non-verbal patients.
I would love to hear from AAC users or their family members of any positive or negative stories in relation to communication in hospitals. It would be great to get an idea of the range of issues that exist and it would be great to hear of any hospitals or States that are doing a great job.
- Tagged AAC, AGOSCI, Alternative and Augmentative communication, communication, communication app, communication device, complex communication needs, disability, hospital, inclusion, iPad, key word sign, non verbal, Special needs, speech
In my aspirations to help as many people as I can I have created, with the assistance of a speech therapist I met during my presentations this year, a fun social group called iChat My Way. We are starting this group to support people, of all ages, with complex communication needs to meet others who use alternative ways to communicate (AAC) and their carers in our local area. The aim of this group is to socialise, practice using AAC in the community and learn from each other about using different AAC methods. But most of all making new friends and having fun.
We have just had our first meeting and although it was a small get together it was still very rewarding and a lot of fun. It was held at our local McDonalds who have been amazing in making their restaurant communication accessible. They have even learnt some Key Word Signs to use when we order and they have menu choice boards made up for us to enable people unable to speak to point and order what they want.
In the past I have always ordered what I thought my daughter wanted to eat or drink. She didn’t have the capacity until recently with her iPad Mini to order or make decisions for herself. I now know that I wasn’t always correct.
At the group on the weekend this was witnessed again. There was a young girl who attended and using her few words and the menu choice board she ordered herself a Happy Meal with a cheeseburger, apple slices and a strawberry shake. We all had a laugh when her mother said “I would never have guessed that’s what she would have ordered. Normally I order her nuggets and fries.” It shows us that as parents we don’t always get it right. But as a parent with a child with complex communication needs we do our best.
We all had a great day and loved ordering our own meals, sharing iPads, playing in the playground and using a number of different ways to communicate to the McDonalds staff. I think the McDonald’s staff enjoyed the day as much as we did.
Last week at the conference my daughter and husband arrived in time to see the presentation before mine, which was presented by a lovely young lady who uses AAC to communicate. She gave her perspective on what it’s like to be non verbal and it’s challenges.
My daughter sat there with an amazed look on her face. She hit my arm and after she got my attention she pointed at the young lady. It was then it hit me…
My daughter had never experienced being in the presence of someone else that was non verbal and that used a device to communicate like her. All through the presentation she laughed and watched intensely soaking it all in. She listened to her talk, using her device and kept looking at me as if to say “look Mum, she’s just like me”.
It was after this moment I realised that very fact. She hasn’t been around people with complex communication needs. She hasn’t been around people who use AAC (alternative and augmentative communication) methods like iPads or speech output devices. She goes to a mainstream school where there are no other students with communication needs. She played soccer in a mainstream team with friends from school.
By no means am I saying that what we have done is a problem or is wrong but I do now realise that there is a need for her to socialise with people like her to help improve her awareness of her need to use her device to communicate and that she isn’t alone. There are others just like her. I want her to meet them and communicate with them. The young men and women at the conference would be fantastic mentors for younger people like my daughter.
So here’s the irony – by mainstreaming our daughter we have limited her exposure to kids with needs similar to hers. By having her at a mainstream school we have broadened the horizon of other kids in the school but we have limited her experience to some extent.
I still fully believe in mainstreaming my daughter at school but now realise the importance of giving her opportunities to meet other people with complex communication needs which will be a major focus for us over the coming 12 months.
- Tagged AGOSCI, Alternative and Augmentative communication, communication, communication device, complex communication needs, disability, iPad, mainstream, mentors, non verbal, school, speech
The day had finally come. It was time for me to present my paper AAC Journey – Connecting with Success. This was the story of our daughter’s AAC journey to date. What has worked and hasn’t worked for us. How she is connecting to the community with success including how I have set up her iPad to communicate when her signing or speech isn’t an option for her.
My husband and daughter arrived to watch me along with some supportive people that I have met along our journey. It was an amazing experience standing in front of a group of people who were there to listen to me and were interested in sharing our story. I only hope they enjoyed and learnt something from our journey.
To start my presentation I asked my daughter to come up with me and introduce herself using her iPad and tell everyone how old she was. I then asked her what her favourite TV shows were. She signed ‘I’ for iCarly and said Spongebob. I wanted to demonstrate how she uses her different modes of communicating depending on what works for her.
I explained to everyone my daughter’s multimodal approach to communicating and how this enables her to succeed in an expanding number of social situations. Her limited speech, signing, gestures and body language are her preferred methods of communicating however she now has the iPad to compliment these methods.
I was really happy with how my presentation went and received some great feedback.
Congratulations and thank you to all the organisers of the Agosci Conference. I had a fantastic time and met some truly inspirational people.
Over the next week I look forward to sharing with you some of my experiences from the conference.